Losing the physical self

I have previous experience with grief, it never leaves you, but you can put the emotion to positive as well as negative uses and also things generally get easier over time. Both of us are grieving for something we have lost. We have to survive the difficult periods, the daily loop containing an unimaginable sense of loss and hope that it does get easier. It’s a different loss to when someone dies, this pain is slower, longer and has regular loops to it. We have lost an almost guaranteed period of future happiness over the coming years. In a little more than 3 months we will be coming up to 2 years after the brain injury yet I feel we probably haven’t reached the bottom yet.

One thing that didn’t help these feelings was putting lots of our old photos onto flickr. I felt it was important for people to get a better sense of who we are, and what we have lost. However I wouldn’t recommend it to anyone in a similar situation, in fact the smartest thing would probably be to burn the lot without looking. Rule number one is don’t live in the past, to look at the happiest times of your life at a time when you are hurting is akin to hanging, drawing and quartering your emotions. Maybe I am a masochist or something but the time it takes to scan an old photo is way too long. It is good to celebrate the good times in your life but part of me thinks that the past may be better forgotten so we can live in the moment.

Rather than doing things like this maybe the sensible thing would be to go to counseling instead. I don’t need to talk about it thank you, I already do, to anyone who will listen. I guess I can sound like a broken record at times, boring the hell out of people, but when has that ever bothered me. It’s not like there is this mass of stuff being held in that needs releasing in counseling sessions. I need to deal with things in my own bloody minded way. The other thing is to go to meetings and join groups but the thought of spending my precious times at some of these meetings I get invited to fills me with dread. Maybe it stems from previous employment but meetings that are self congratulatory without achievement are one of my pet hates. The thing I have found that helps me most is just to actually keep busy and get on with stuff that I enjoy. Over doing stuff could potentially cause problems but for bloody minded people it’s a necessity, you can be sure as shit if you do nothing you are lost.

Although the prospect of happiness seems forlorn at the moment, we are two lucky people who have had lots of the elusive stuff in the past. One way of looking at it is whatever happens we will definitely have had an experience. Surely life needs change, there has to be suffering and you can only do a good thing for so long anyway. As long as I occassionaly continue to get that warm feeling inside, that love of life, then I know I will be OK. I just hope one day Anita can feel the same.

When I was a young child I remember looking out of the window during a storm and watching a neighbors house being struck by lightning. I remember looking right into the eye of the bolt the moment it struck, I find it difficult now to visualise exactly how it looked. I remember that it was some kind of fireball outside the limits of my imagination. I recount this episode because when bad things happen to you in life they can also take you to this place, somewhere that is beyond words or vision. It is possible that a door can be opened and you can go to a place deeper inside yourself than you thought possible. Unfortunately in this post I am not referring to the beautiful pure white calm but the exact opposite. Both take you to a place beyond your control, but this will demonstrate fragility, hopelessness and a sense that life can take you much further than you ever thought possible. I can’t really describe it more than this but only that those people out there who have seen it up close will understand.

Throughout the last few months there has been various little changes around our house to help Anita get around. Her bedroom has had some grab rails added so that she can practice her standing and propel herself along. One of the biggest problems has proved to be the door thresholds. Not long before Anita’s injury we installed new doors front and back. Unfortunately like many doors there is a bottom lip where the door goes deeper than the threshold. This has meant that any internal ramps fitted need to be temporary.

The rear door is very narrow but with the new ramp Anita can pull herself outside with a small struggle. At the moment she can’t get back in because there is a small 45 degree piece of wood. A longer ramp, or alterations to our decking will need to be made. The small front wheels on her chair make it difficult for her to propel herself over even the slightest rise.

The front door is a major issues because there has been a refusal to take Anita out on health and safety grounds. Hopefully this new temporary ramp inside and the one outside will mean this will soon not be a problem.

I had to write about the recent bombs in London, but the people who committed these atrocities are murderers, pure and simple, not terrorists or extremists.

All murderers justify themselves, its an ego thing, but we must not try to justify their actions, no one is that brainwashed! The families are no way to blame and have no reason to know their sons were unbalanced, real psychopaths can hide it very well!

After almost eighteen months, I finally go forward!My balance is much better, I use my arm and I walk with a frame! About bloody time! My speech and writing are better and I transfered myself to the toilet myself today. Nothing is easy any more, for thirty years plus I could walk effortlessly, now I can’t stand up! and try going to the toilet when your left side is useless, not easy! I can’t just nip to the loo when I want, I have to wait for my Carer in case I fall, then transfer from my wheelchair to the toilet, having positioned myself first, then I struggle to pull my clothing. Try taking your pants up and down while sitting on the toilet and your left limbs are no help, I tend to crash around a lot at this point and other people are tempted to help me, but they mustn’t as I won’t get better, but its very tempting and I couldn’t watch anyone struggle if I could help!

So I am sat in the garden in the heat, the cat has just walked past and looks very cheesed off and Howard is watching the Open golf!

I am off anti-depressants and very pleased! I weaned myself off them originally as I was very depressed and thought a different brand could help me, but to try a different anti-depressant I had to wean myself off the brand I normaly took and that took so long, I am OK now!

I used to get very depressed about once a month, for no reason, so thought it must be hormonal. Took oestrogen but was sick and hormonal patches that did nothing too. Hoped I was going through an early menopause, anything to explain the depression, which was awful! I am not even a ‘depressive’ type of person and I definately don’t agree with suicide unless you are terminally ill and here I was considering it!

I was given the anti-depressants in hospital, as I was bound to be depressed after what had happened to me wasn’t I? and my dosage was upped in Rehab, but they have never really helped me as far as I am concerned. I get pissed off sure, I researched my operation, surgeon and hospital and still ended up like this, but I would’t say I was depressed.

I just drink a lot now, a drug I prefer for once!

I have always liked the sea and starfish, so this parable was bound to appeal on one front or the other. I heard it on Radio 2 one morning ages ago, done my exercises and waiting for my Carers.

An old man is walking down the shoreline, when he see’s a young boy in front of him bending down and throwing something into the sea. He runs to see what the boy is doing and see’s that loads of starfish had been washed up by the tide and the boy was throwing them back. There were many starfish, so the old man asked the boy why it mattered, as he couldn’t throw all the starfish back into the sea, so the boy looked down at the starfish in his hand, threw it back and said,’ It mattered to that one.’

It does matter, if only one person gets help from this website, it will have served its purpose!

The work to convert our garage into a living space for Anita was recently completed. As time has gone on it was getting more important to create a space suitable for her. Having a bed in the lounge for so long was just to uncomfortable. We decide to let the Bedford branch of the Garage Conversion Company take the strain of doing the development. They did an excellent job and made the whole thing look easy. It was a little uncomfortable for a while having them digging up our garden but now it’s done it’s a fantastic space. Realising we would never get any government funding to do the work we had to bite the bullet and get it sorted. It’s not something we would have chosen to do previously but now it’s done I can see the sense in doing a conversion, we all use our small garages only to store rubbish anyway. The conversion costed us around 13.5k and we did save some money on the VAT relief. You are allowed zero rated VAT but only on the installation of the bathroom which counted no more than 5% of the overall cost.

During the conversion there was various visits from OT’s so that they could input into the layout. The bathroom was made a little bigger and the toilet centred on the room. They supplied drop down handles for the sides of the toilet. I have learned that the positioning of everything is very important and can be quite difficult to determine because it all depends on how Anita will transfer herself in the future. I would urge people doing something similar to make sure that they give this some thought. The shower and sink where fitted low down so that it was best for Anita and now she has been able to have a shower for the first time in ages! Without the shower she would have only ever been able to wash herself in bed which is not very nice.

You can see the full photo set of the conversion on flickr.

Friday night, I drive home with the now too familiar knot in my stomach, that’s a few times in a row now. I don’t understand why because it’s not that different from countless Friday nights pre 11/11. I used to feel so much lighter on Fridays and now I don’t really understand it. It’s Friday, it’s the weekend, psychologically it just makes the loss bite that little bit more. Maybe we should have got out of here so that we didn’t have the chance for our minds to make connections with those previous memories. We never really understand our own state of mind, it’s a law into itself, believe you me it’s best not to, happiness is something that just is, it’s a state of being, you just can’t manufacture it. Like love it’s just there and it’s best to soak it up while it lasts. Swings and roundabouts, you have to pay the price sometime. I always knew that’s the score, I always knew it would catch up at some point. You can only go for so long with the status quo but eventually you know something big is coming round the corner. Truth is I knew deep down a massive change was coming before Anita went into hospital, your intuition tells you. The thing is you can’t take a step back, you go with it, it’s best to drive yourself on regardless, use what you feel inside to get things done. My sheer bloody mindedness will never let me stop.

I remember those days back in the hospital, I would turn up for the ‘lets watch Anita take a battering show’ then come 8.00 it would be time for home again. I would drive back on my own with the occasional screaming into the night to let it out. Mentally screaming that is, every so often you need to let the pressure out. I doesn’t seem to go away, the occassional day when it it’s hard. I have tried to drink away the pain but I don’t even get affected by alcohol, it doesn’t even touch the sides. I hear a story, any story of someones troubles on the news, it doesn’t even cause a ripple on the surface of my emotions. Will I ever feel anything again other than pain, numbness and anger! I do have an excuse of course, I have seen the only person I’ll ever love on this whole planet be taken to pieces, medically and mentally. She’s so strong, I know she can take much more than others and that makes it easier. Poor me, I certainly don’t want sympathy because even though what I have just said sounds bad, it isn’t really that difficult. I know what I am suffering is a fraction of what Anita has to go through and I have the sure knowledge that it would take an enormous amount to dislodge me. In fact most of the time it surprises even me how easy it is, I think the secret is to love life and I hope that’s something that will never dry up. If you can see more in less and take more out of life with less then loss isn’t really that bad after all.

I have reworked and expanded the website. I apologise to the 2 people who made recent comments, due to problems and changes I have lost them, you are welcome to add them again. There may be the odd problem and changes over the next few days so I ask for your patience please. I had a few problems with the old website and decided to change it so that it was powered by wordpress and I also wanted to move to a different web host. My increase in knowledge of wordpress meant that it was time to take advantage of it’s powerful dynamic content management and change from movable type. All the content on the wesite is easier to expand and update so it should be easier to respond to the fantastic feedback on the wesite. We always welcome suggestions for improvements, particularly if they are helpful to anyone with brain injury.